LeeAnn Bowers, 22, of La Pine, pictured outside the Fresenius Medical Care office in Bend on Monday, has undergone dialysis three times per week since she was 13. “I feel like a little ant in this big world,” she said. “My kidneys are in the final stage of kidney failure. They’re really bad. I don’t think it’s fair that I can’t get a kidney because I don’t have money.”

According to the Organ Procurement and Transplant Network, more than 4,000 organs, both usuable and unusable ones, were discarded in 2012. In that same year, 6,467 individuals in need of a transplant died on the waiting list.
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In the late 1990s, older individuals who needed organ transplants were often out of luck. Transplant centers summarily declined to list candidates over age 60, giving preference to younger patients who could get more years of life out of a donated organ. At the same time, centers were unwilling to take older or slightly damaged organs that might not survive more than a few years post-transplant.

That gave Dr. Abbas Ardehali, head of the transplant program at Ronald Reagan UCLA Medical Center, an idea. Why not pair up older or damaged organs that no one wanted to use with older patients that no one wanted to transplant?

Between March 2000 and September 2006, UCLA completed 50 lung transplants in patients between the ages of 65 and 72. After their transplants, 80 percent lived for one year, and 74 percent lived at least three more years. Nearly half of the lungs transplanted were considered marginal in quality, organs that many other centers would typically reject.

“Some of the organs that are considered unacceptable might still be usable,” Ardehali said. “The fact that we’re using not-so-good lungs and putting them in older recipients that still turn out to be OK, just proves the point.”

But even as Ardehali and his colleagues published the results of their success in 2008, the landscape for transplants shifted dramatically. Medicare regulations implemented in 2007 started holding transplant centers to certain patient and organ survival rates post-transplant. Almost overnight, it became much more difficult for programs to transplant older patients.

“It precludes a more marginal organ being transplanted in an older or maybe a little bit more medically complex recipient, because they know that outcome won’t meet the standard measures,” said Charles Alexander, chief executive officer of the Living Legacy Foundation, the organ procurement organization serving most of Maryland.

The number of individuals older than 65 receiving organ transplants in the U.S. has increased from 2,169 in 2002 to 4,514 in 2011, and from 2002 through 2006, elderly transplant candidates represented a growing percentage of transplants. After the new rules were implemented, the percentage started to drop, from 27 percent in 2007 to 23 percent in 2011, while the numbers of wasted organs continues to rise.

According to data from the Organ Procurement and Transplant Network, more than 4,000 organs were discarded in 2012, including some 2,700 kidneys, nearly 700 livers and 180 lungs. In that same year, 6,467 individuals in need of a transplant died on the waiting list.

Not all of the discarded organs were suitable for transplant, and in many cases organs were either not a match or too far away to transplant into individuals who could use them. But many in the transplant field believe the same regulations that are causing transplant centers to avoid higher-risk candidates are making lower quality but viable organs virtually unusable.

“Getting the right organ to the right person is not as simple as it sounds. But by the same token, a liver that’s gone in the garbage can that’s perfectly good for transplant? That’s crazy, and that’s what we’ve got to stop,” said Dr. Peter Stock, a transplant surgeon with the University of California, San Francisco. “Any organ that goes into a waste bucket is someone who died.”

Cross purposes

The reasons behind the growing number of discarded organs are as complex as the organ transplant system itself. In 2003, Health and Human Services Secretary Tommy Thompson launched the Organ Donation Breakthrough Collaborative, which sought to increase the numbers of organ donations. By sharing best practices for promoting organ donation to the nation’s largest hospitals, from 2003 to 2006, the collaborative increased the supply of organs by more than 24 percent, resulting in an additional 1,000 organ donors.

While one agency was promoting an aggressive approach to procure all transplantable organs, another agency at HHS, the Centers for Medicare and Medicaid Services, or CMS, was developing survival rate metrics for transplant centers that encouraged a much more conservative approach.

Although the metrics included some adjustments for the lower survival rates expected with marginal organs, rightly or wrongly, it tempered programs’ appetite for the lower quality organs.

Organ procurement organizations, or OPOs, the groups charged with recovering organs from deceased donors, suddenly found transplant centers unwilling to accept many of the organs they were offering.

“We’re being held accountable to get every organ out there or CMS will close us,” said Teresa Shafer, executive vice president of LifeGift, an OPO in Houston, and former chair of the Breakthrough Collaborative. “If (transplant centers) take those organs, that could affect their outcomes and they’ll close them.”

And as a result, the discard rates jumped. From 1995 to 2003, the discard rate grew slowly from 2,225 organs to 2,584 organs. In 2004, after the Breakthrough Collaborative started pumping more organs into the system, the rate jumped to 3,246 organs. The discard rates then peaked in 2007, at 4,105, when the transplant centers regulations went into effect and have never fallen to 2006 levels again.

“At some point, everybody decides these organs are just not worth using because of the risk, and then they get discarded,” said Dr. Michael Abecassis, who heads the transplant program at Northwestern University in Chicago. “Maybe that organ would have been good for somebody if you’re looking at different types of outcomes. But if you’re being judged on them, you’re just not going to take the risk.”

Although the breakthrough collaborative ended in 2006, subsequent efforts at HHS have continued to push the same aggressive approach. CMS continues to evaluate OPOs based on their ability to recover more and more organs for transplant, in direct contrast to the more conservative approach of the transplant center rules.

“There’s not one single metric in the OPO regs that talks about transplant outcomes, and there’s not one single metric in the transplant center regs that talks about utilization of organs,” Abecassis said. “To have two set of regs that are so opposite to one another has actually caused some significant friction between OPOs and transplant centers across the country.”

In some cases, the OPO might not know the quality of a kidney until it is removed from the donor and tested. In other cases, kidneys that looked good initially don’t survive the trauma of being removed from the body. OPOs complain that they incur costs to recover all those organs, and they don’t get paid for those costs unless transplant centers accept an organ.

Because part of the OPO evaluation metric considers the number of organs they recover from each donor, it’s tempting for OPOs to avoid donors with only one high-quality organ. While centers are more willing to take marginal kidneys, OPOs find they might not be able to place other subpar organs.

“The reality is that the OPO procuring the organs can’t do that in a bubble,” said Alexandra Glazier, vice president of the New England Organ Donor Bank. “It has to have a willing surgeon on the other side to accept the organs.”

Degrading quality

Transplant programs may have to make do with more marginal organs going forward. Ideal organs generally come from young, healthy individuals who incur a traumatic death. Those types of donors are becoming less common, due to gains in highway safety and medical advances that can save accident victims from brain death. A Canadian study released in October found that the percentage of patients with brain injuries who eventually were declared brain dead fell from a high of 9.6 percent in 2004, to 2.2 percent in 2010.

Donations after brain death accounts for half of kidney transplants, three-quarters of liver transplants, 90 percent of lungs, and all hearts. But that is changing.

An increasing proportion of organs are coming from patients whose hearts stopped beating before the other organs could be recovered, or from older, sicker donors. Both categories of organs have a lower chance of surviving one year after transplant.

“We are seeing more and more organs sitting in that category of marginal organs,” Alexander said.

Expanded-criteria donor kidneys (ECD), for example, have an 82 percent one-year survival rate, compared with 90 percent for a standard-criteria kidney. A kidney procured from a brain-dead donor has a 91 percent one-year survival rate, while those recovered from donors after cardiac death (DCD) have an 89 percent rate.

When patients are listed for transplant, they are usually presented with a menu of organ types, each with different risk profiles, and asked to choose what types of organs they would accept. When organs become available, doctors and transplant coordinators decide whether they are willing to transplant that organ into that patient and whether to pass on that offer to the patient.

Studies show that in aggregate, transplant candidates who accept ECD kidneys do better over the long run than patients who wait on dialysis for a more ideal kidney. While standard kidneys last an average of 10 years post-transplant, ECD kidneys average five.

“We have to relook at what three to five years of quality of life means for a 70-year-old recipient of a 60-year-old donor kidney, who is no longer on dialysis and has meaningful time,” Alexander said, “as opposed to bypassing that opportunity, discarding that kidney and not transplanting that patient.”

Geographic variation

Nationally, about 43 percent of those on the waiting list consent to taking ECD kidneys. But in 23 of the 58 donor service areas in the U.S., the rate is higher than 50 percent, and in nine areas, it’s between 80 and 100 percent.

In more rural areas and in the middle of the country, wait lists are shorter so transplant candidates have a much better shot at a more ideal organ. In major urban centers, particularly on both coasts, wait lists are much longer and patients and surgeons are more willing to consider marginal organs.

“The fact that their outcomes are good, you would think, would be enough to convince physicians in other parts of the country that they should be considering donors more broadly,” Glazier said. “And yet they don’t really have any incentive to do so.”

The regional differences have prompted many individuals needing transplants to list in multiple regions. Steve Jobs avoided a long wait for a liver in California by joining the much shorter waiting list in Tennessee. But studies show it’s predominantly affluent white Americans who can travel for transplants, further exacerbating inequalities in access for low-income and minority transplant candidates.

Amy Staples, 55, lives in what she calls a “podunk town,” Weaubleau, Mo., about 60 miles north of Springfield. She spent six years on the kidney transplant list at the University of Kansas Hospital but was inactivated in 2012 when she couldn’t make it the 120 miles to Kansas City to undergo a stress test with the hospital’s cardiologist on short notice.

Taking care of five grandchildren, it’s a major logistical undertaking for her to get away.

“It’s a cooperative effort to get to an appointment,” she said. “We all have to work to get this done.”

Now with all of her tests completed, she is trying to get listed again at the University of Missouri transplant center about 140 miles away and at Barnes Jewish Hospital in St. Louis, 230 miles away. But she must first raise the money to be able to relocate for the transplant.

“People like me who actually live in the rural areas and do not have finances to get there, our chances of getting listed and staying listed for transplant are far less than someone who has good insurance, who can pay for travel expenses and what not,” she said. “It’s really a discrimination to the poor.”

The need for annual evaluations often becomes a form of financial triage, weeding out those candidates who might not have the means to keep up with their medications and post-transplant care.

LeeAnn Bowers, 22, of La Pine, has been on dialysis three times a week since she was 13. Like her mother, who died four years ago, her kidneys have been damaged by repeated infections caused by kidney reflux disease.

A troubled teen and frequent runaway from the child welfare system, she quit smoking last year in order to qualify for a transplant. But now her doctor has told her that unless she has $5,000 in the bank to cover nonmedical expenses, she won’t be eligible for a transplant.

“I feel like a little ant in this big world,” she said. “My kidneys are in the final stage of kidney failure. They’re really bad. I don’t think it’s fair that I can’t get a kidney because I don’t have money.”

The up-front financial requirements help transplant centers weed out those patients who won’t be able to make it to follow-up appointments or those who can’t afford to keep up with the post-transplant protocols.

“Transplant centers have found that patients with limited financial resources have higher rates of noncompliance with post-transplant medical care,” said Robert Woodward, a health care economist at the University of New Hampshire. “Because noncompliance with post-transplant care is a leading cause of rejection, infection and death, transplant centers may be more hesitant about providing access to transplants to those with limited financial resources.”

In August, Woodward published an analysis that showed unemployed kidney transplant candidates are much less likely to get listed, and if listed, wait longer for a transplant.

Staples also faces difficulty finding a kidney donor, because she has high levels of antibodies, thanks to 11 blood transfusions needed to treat a life-threatening blood infection. But thoughts of also listing at faraway centers that have experience with highly sensitized transplant patients might be equally out of reach.

Those sorts of inequalities in access worry UCLA’s Ardehali, but he said smaller centers may not be able to take on the risk that larger programs like his do.

“We have at UCLA an infrastructure and organization that is suited to take care of these high-risk patients,” he said. “We have a larger denominator, so that we can absorb it if there is an adverse outcome.”

Risk aversion

Still, a number of studies suggest transplant centers may have become too risk averse about marginal organs. According to one analysis, in 2009, 44 percent of ECD kidneys were discarded, yet 75 percent of those were likely transplantable.

Researchers from the University of North Carolina recently looked at liver discards from donors from whom at least one other organ was transplanted, meaning they weren’t too old or too sick to provide viable organs. They found that the proportion of discarded livers had been steadily dropping from 66.2 percent in 1988 to 14.8 percent in 2004. But after development of the new CMS metrics, the rate climbed to 20.7 percent by 2010. Had the rate remained stable, 382 more livers would have been transplanted that year. Meanwhile, the higher-risk DCD livers are accounting for an increasingly higher percentage of the livers discarded, from 8.7 percent in 2004 to 28.4 percent in 2010.

“It certainly doesn’t help things when centers are judged by their outcomes,” said Dr. Eric Orman, a liver specialist and lead author of the study. “When you take on a higher-risk organ, that could hurt your program.”

Similarly, transplant centers are routinely turning down organs from so-called CDC high-risk donors. Those include donors who engage in certain behaviors — such as drug use, prostitution or sex between males — thought to increase the risk of HIV, or hepatitis B or C transmission. The transplant program at Columbia University Medical Center has been tracking their outcomes with such kidneys, 84 percent of which were turned down by transplant centers in other regions. Yet, after an average of more than two years of follow-up, 86 percent of those organs are still functioning and with no cases of HIV or hepatitis transmission.

Highly advanced testing can detect the presence of those viruses within 7 to 9 days of transmission, limiting the window in which an infected organ could bypass detection prior to transplant. The odds of transmission, says Moya Gallagher, the transplant coordinator at New York Presbyterian Hospital and lead author of the study, aren’t really much higher than those in the general population.

If organs do test positive for hepatitis C, they can still be transplanted into patients who are already infected, and last year, President Obama signed into a law a measure that would allow HIV-positive organs to be transplanted into HIV-positive patients.

In some cases, patients object to getting even ideal kidneys from a prostitute or a drug user. But more often than not, it’s the surgeons themselves that are turning down those organs.

Gallagher said even if a donor organ passed HIV or hepatitis to the recipient, it likely wouldn’t impact one-year survival rates.

“I suspect they’re turning it down because there’s a lot of sensation around the donor transmitting HIV,” Gallagher said. “You can kill 10 patients quietly, non-sensationally, and nobody will ever know it. But there are certain things that people don’t like to hear about. I don’t want it in the press that my center gave a patient HIV.”

Centers also differ in how much say patients have in deciding whether to accept an organ.

“Some centers will turn that kidney down on behalf of the recipients without discussing it with the recipients. To me that’s wrong and we don’t do that,” said Dr. William Bennett, a kidney transplant surgeon at Legacy Good Samaritan Hospital in Portland. “I do think it’s unethical to turn down kidneys for people without consulting them.”

Distribution issues

Yet marginal and high-risk organs are routinely turned down. An analysis of organ sharing data by surgeons at the University of California, San Francisco, found that 84 percent of patients who died waiting for a liver had received at least one organ offer and an average of six offers. Most were declined by the surgeons due to donor age or quality of organ.

“Wait-list deaths are not simply due to lack of donor organs as many of us assume,” lead author Dr. John Roberts said, citing the stigma of non-ideal livers.

When surgeons become more selective about marginal organs, it can quickly result in a snowball effect. When an organ becomes available it is offered electronically to centers in the region and across the country. The more centers decline an organ, the more surgeons with patients lower down the list begin to wonder why the organ has been passed on so many times. And with each refusal, the time the organ sits on ice and degrades in quality increases. Kidneys can still be transplanted up to 48 hours after being put on ice, livers less than a day. If no center is willing to take a chance, eventually the organ is simply thrown out.

“Our system is pretty slow,” Roberts said. “It works well for good organs. It doesn’t work that well to get not-so-good organs broadly distributed.”

CMS officials discount the notion that their regulations have turned programs against marginal organs. They cite an analysis from the University of Michigan that shows centers are doing on average higher risk kidney transplants today than when the rules were implemented in 2007.

But that same analysis found that the use of ECD kidneys dropped 13.7 percent from 2007 to 2010, and the decline was greater in programs that were flagged for review by CMS.

Gallagher admits the focus on achieving certain survival rates to stay within the agency’s good graces is a constant worry.

“You want people to do well, and the outcomes aren’t always great. The population is tough, the kidneys aren’t always perfect. So yeah, we worry. It’s a tough business we’re in,” she said. “But for the most part, people are better off getting transplanted.”

Donor kidneys can be classified into one of several different categories, each with a different survival rate.

Standard-criteria donor (SCD): These organs are generally the highest quality category, and include all deceased donor organs that don’t fall into other marginal organ groups. The classic example would be a kidney from a 35-year-old man with no history of hypertension or diabetes and for whom the cause of death was a motor vehicle accident.

Expanded-criteria donor (ECD): Organs from deceased donors older than 60 or those ages 50 to 59 with certain health conditions that could impact organ quality. The criteria for ECD was based on variables that increased the risk for graft failure by 70 percent compared with an SCD organ.

Donation after brain death (DBD): An organ from a donor who had primary brain death while heart beat and breathing remain intact or are maintained by medical equipment. A DBD could be an expanded or standard criteria donor depending on whether the criteria for those designations are met.

Donation after cardiac death (DCD): Organs from donors whose hearts stopped beating before the organs were procured. Circulation may have stopped spontaneously or through the withdrawal of life support.

CDC high-risk donors: Organs from donors who engaged in lifestyles or had medical conditions known to increase the risk for transmission of HIV or hepatitis B or C, including:

• Men who have sex with men

• Intravenous drug use

• Hemophiliac who have received human-derived clotting factor concentrates

• Prostitution for money or drugs

• Persons who have had sex with other people in the high-risk category

• Persons who have been exposed to HIV-infected blood

• Inmates of correctional systems

Clinical outcomes

Use of “expanded criteria” organs lowers the odds of patient and organ survival one year after transplant.